Below you will find links to articles and other resources on the topics of insurer and law enforcement use of genetic information from a variety of perspectives. Many of these articles are publicly available, although a handful may be behind paywalls.
Insurer Use of Genetic Information:
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NHGRI, Genetic Discrimination (January 2022)
National Institutes of Health information about federal protections regulating health insurer use of genetic information
https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination -
Jarrod O. Anderson, Anna C. Lewis & Anya E. Prince, The Problems with Patchwork: State Approaches to Regulating Insurer Use of Genetic Information, 22 DePaul J. Health Care L. (2021)
A 50-state survey (completed in 2021) mapping state regulation of life, long-term care, and disability insurer use of genetic information
https://via.library.depaul.edu/jhcl/vol22/iss1/1/ -
A.C.F. Lewis, R.C. Green, & Anya E.R. Prince, Long-awaited progress in addressing genetic discrimination in the United States, 23 Genetics in Medicine 429 (2021)
An article discussing Florida’s 2020 law barring life, long-term care, and disability insurer use of genetic information
https://www.nature.com/articles/s41436-020-01002-y -
American Council of Life Insurers (ACLI), Q&A: Life Insurance Companies and Genetic Information
A pamphlet from the ACLI regarding life insurer use of genetic information
https://www.acli.com/-/media/acli/public/files/pdfs-public-site/advocacy/riskclassificationgt_qanda.pdf -
Patricia Born, Genetic Testing in Underwriting: Implications for Life Insurance Markets, Journal of Insurance Regulation (2019)
An article assessing the potential impacts of life insurer use of genetic information
https://naic.soutronglobal.net/Portal/Public/en-US/DownloadImageFile.ashx?objectId=9554&ownerType=0&ownerId=26013 -
Genetic Discrimination Observatory
An international collaboration of researchers focused on genetic discrimination
https://gdo.global/en -
Gollinghorst, D. et al, Anti-Selection & Genetic Testing in Insurance: An Interdisciplinary Perspective, Journal of Law, Medicine & Ethics (2022)
An article interrogating claims of adverse selection if insurers cannot have access to genetic information
https://www.cambridge.org/core/journals/journal-of-law-medicine-and-ethics/article/abs/antiselection-genetic-testing-in-insurance-an-interdisciplinary-perspective/6A9063081A5F0EF5D0F7518C3BE315D2 -
Prince, A.E.R., The Genetic Information Privacy Act: Drawbacks and Limitations, 330 JAMA 2049 (2023)
An article highlighting the limits of the Genetic Information Privacy Act, a model law that many states have passed in an attempt to shore up genetic privacy.
https://jamanetwork.com/journals/jama/article-abstract/2811606 -
Kristen V. Brown, Genetic Discrimination is Coming for Us All, The Atlantic (November 12, 2024)
A news article highlighting cases of genetic discrimination by life, long-term care, and disability insurers
https://www.theatlantic.com/health/archive/2024/11/dna-genetic-discrimination-insurance-privacy/680626/
Law Enforcement Use of Genetic Information:
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Natalie Ram, E.E. Murphy, & S.M. Suter, Regulating forensic genetic genealogy, 373 Science 1444 (2021)
This commentary describes Maryland’s law regulating law enforcement use of genetic information and describes key elements of the law that make it a model for future lawmaking.
https://www.science.org/doi/10.1126/science.abj5724 -
S.M. Suter, E.E. Murphy, & Natalie Ram, Maryland can be a model for regulating law enforcement use of genetic databases, The Washington Post (June 18, 2021)
A newspaper article discussing the recent Maryland law regulating law enforcement use of genetic information.
https://www.washingtonpost.com/opinions/2021/06/18/maryland-genetic-databases-law-enforcement-regulation-model/